Daily Doses of Dot

I grabbed my bag and power walked down the hall. The Cliff Bar I picked up the night before at Walgreens (welcome to my version of adulting) in attempt to eat something other than peanut butter, hung out of my mouth as I shifted for my ID badge in the elevator. Too early for the shuttle, too early to walk –that leaves Uber. I glanced down at the bar and then at my phone, 3 minutes. My phone pinged, initiating the countdown. 5:10AM. Well if Justin and Madonna can save the world in 4 minutes, then hopefully I can finish this Cliff Bar in 3. This flavor was weird. The gnarly mint one I had mistaken for oatmeal. Oh well.

As I walked through the lobby I remembered another human was about to see me. Hmm, I debated what was more important, my dignity or my half eaten breakfast. 5:13AM. I’m not sure I actually settled that one. Reluctantly I took the bar out of my mouth as I got into the car. As I started friendly conversation with my driver all I could think about was how this thing was melting in my hand. Peanut butter would never do this to me.

He glanced through the rearview mirror. And then did a double take. You look so YOUNG! I smiled hesitantly. This happens a lot. I offered up my most genuine delivery, “Haha oh thanks, yeah, I look a lot younger than I actually am…” Wait for it… wait for it…

Really?? How old are you?!

“Um… 26?” I don’t know why but I always answer that like I question myself. Kate, do you know how old you are? Are you really just a teenager posing as a 26 year-old? Sometimes I feel like it.

Really?!? NO! I thought you were, 17! Are you sure??

Maybe that’s why I constantly question myself –after encountering so much (friendly) interrogation I feel like, well, maybe I’m not who I say I am. Insert nervous laughter here. I still don’t know how to respond.

I’m positive that one day this will be easy. I imagine somewhere around the age of 50. Then a simple “thank you” and smile will feel right. But at the moment, I’m stuck in the awkward place –I feel weird saying thank you, I’m glad you think I look like a teenager… but I also feel obligated to respond. Often, nervous laughter just fills the empty space while I try to decide. Beyond that I’ve conjured up some great space fillers, my favorite probably being “good times.”

Good times is perfect for any awkward situation –even if you’re not actually having a good time. Sarcastic undertones are my favorite. I feel like it’s often missed, probably due to the fact the delivery is coming from an awkward unassuming girl who looks approximately 17 years old.

But that’s okay. I enjoy knowing the context of my delivery.

This hasn’t always been the case. Looking back to elementary school, I felt like a fairly normal kid (minus the excessive bathroom trips and frequent bouts of nausea). But after falling below the growth curve my pediatrician suggested a bone scan. It’s quick and simple. They x-ray your wrist and evaluate the growth plate to determine how old your body appears, and then compare that to where it should be. The results? 2 years. I was 2 years behind. I didn’t expect the news to mean much to me, but 2 years? Suddenly it stuck to me. And even to this day I remember it well. From this point I felt like I had a little voice in my head that was pushing me. Telling me I needed to make up for those 2 years in other ways. I used school as an outlet. I volunteered. I did extracurricular activities. I pushed myself. But it wasn’t just about being behind. It was about being different. Having Crohn’s, at least for me, made me feel like I’ve had to prove I am equal.

My friend Cat sent this to me a couple years ago. It has since become somewhat of a life motto.Now things are a little different. I’ve given up on the quest to fit into that normal category. I embrace my awkward side. I appreciate who I am. It’s not a perfect appreciation, but I’m working on it. After comparing myself to other people for so many years I eventually realized, “hi, hey, over here, yeah you… you’re suck with me” –so might as well enjoy the ride.

Cheers,

Kate

Future: crazy cat ladyAfter thought: plus if it means that not wearing makeup and decking myself out in cat paraphernalia will let me skip airport security, then I’m okay with it.

As I struggled free from the passenger seat I already knew it was too late. I had been in this parking garage hundreds of times. I looked around desperately as I tried to mask my panic. I’m going to puke. I didn’t wait for him –I knew he’d catch up before I made it across the lot. I heard him shuffle for the keys and jog over. He grabbed my hand. I grabbed my side. I’m going to puke. We made it out of the parking garage. I crouched next to a bush just outside the lot. To my surprise I only mustered a gargle. Huh, maybe I’m going to make it. Out of the corner of my eye I saw the hill that awaited us. Why. Why is the entrance to the ER on a hill? I wanted to lay down there and give up. Okay, I’m good. This is close enough right? Go on without me. I imagined sinking into the cold concrete; for a moment the air felt, nice. *Heaves* we didn’t make it –but at least I hit the bush.

He grabbed my hand, and we continued on. Onward and upward, right? I paused halfway up the hill and started to giggle. I winced. I look 5-months pregnant, in my pajamas, no makeup, and dry heaving on the sidewalk. I cocked my head to the side in between heaves; “I’m the sexiest person EVER right now. You’re such a lucky guy.” He chuckled and we finished out our journey up the hill. I had avoided coming in the night before. Weekends. The ER on the weekend is like lines at Disneyland –you know you’re supposed to be having fun, but you’re caught on the other side, just watching. I braced myself for the crowded room. Empty? I stopped for a second and scanned the room. I half expected a mob to jump out from behind the chairs and yell, JUST KIDDING! I snapped back. It’s really EMPTY. I know the ER doesn’t exactly trigger feelings of joy, but holy cow, IT’S EMPTY. I winced again.

I handed the registrar my insurance card and ID. She stared at me. “Um, I think I have a bowel obstruction.” She continued to stare.

A few belly taps and one CT scan later confirmed, your insides hate you –I mean, you have a small bowel obstruction. The nurse approached with a nasal-gastric tube. Oh man. I was already mentally preparing myself. “You done this before?”

So we meet again (my arch-nemesis).

After you’ve had a large plastic tube shoved up your nose, down your sinus cavity and into your stomach, you feel like anything is possible. “Swallow, swallow, swallow,” the nurse continued her mantra. Blood flowed down my face. Didn’t quite fit. Onto the next one, or rather, nostril. Luckily a downgrade in tube size did the trick and my gastric juices were flowing out of my nose within minutes. Sorry for the visual… I know, didn’t think this could get any sexier, right?

I closed my eyes and waited. Flashing call lights, morphine, emesis bags… before I knew it, Sunday came and went and Monday had arrived.

Let’s get surgical, shall we? I felt an odd sense of relief in the holding room. I needed relief. I was like a giant water balloon that the kid next door had filled up too far, and well, I was just waiting to fall and POP. At this point popping sounded nice. The obstruction almost got the last word. I laid down on the OR table and felt something creeping its way into my throat. “I think I’m going to be sick.” I winced again. Luckily for me I’ve got some pretty amazing doctors and before that feeling could make its way out, I was under.

I woke up relieved. And then quickly snapped to…as I stretched I felt my abdomen. Staples.

Two thumbs up for deflated and stapled.

Just as I started projecting my recovery time my nurse walked in. The NG tube was coming out. HALLELUJAH. Okay, I’m so ready for this… I sat back and waited. I was ecstatic. She turned to me; “actually it’s easier if you pull it out.” Wait. What? “Um, are you sure?” Something about putting yourself through physical discomfort… I can handle an external pain source, because I can focus on blurring the pain. But it sends conflicting messages when I’m the one causing the discomfort. It’s like smothering a tiny voice in your head that’s screaming, “STOP STUPID, WHY, WHY ARE YOU DOING THAT?!?”

I took a deep breath, closed my eyes, and pulled. The pressure wasn’t too bad, until I realized I was also holding my breath. I could hear little alarm bells going off in my head. BREATHE. No, no, not yet. I pulled faster… I felt like gaging. No, no, no, just pull it out. How long is this thing?! Finally I felt the end travel up passed my throat and slide out my nostril.

A few days later I was home, hobbling around –you know, that post-surgical swagger. It’s been a little over a month since the obstruction and I’m back to “normal.” I mean as normal as you can get with an ileostomy and stoma named Dot. But, bloated bowel humor aside; I’m extremely lucky to have such amazing people by my side. Thank you to the boy who held my hand; my parents, whose dedication frequently goes above and beyond the call of duty; my friends and coworkers, you guys are the bomb –who else would keep you company at 2AM in the hospital?

Luckily, my first experience with an ostomy leak was small. It happened in my apartment and I had all the necessary supplies at my disposal to fix it. No problem. After that, I read up on tips for adhering the bag and developed my own foolproof application technique. Or so I thought.

My first major leak happened during class. I was taking an evening MCAT prep course and had rushed home from work to make the session on time. That day, I deviated from my normal “meh” routine and decided I would try to be a presentable human. So I changed out of my scrubs and kicked the yoga pants to the side. Instead I grabbed my favorite pair of jeans. I hadn’t worn these babies since surgery, and honestly I wasn’t quite sure how it was going to work out. But hey, what could go wrong? After I put on my jeans I realized the ostomy didn’t quite fit. The base of the wafer sat just above the waistband. But I was too tired to change, so I opted to leave the bag outside the waistband and throw on a sweatshirt. Without much more thought, I ran out the door and headed to class.

The lecture was on PCR. This was my jam. I love the topic and was extremely focused on the lecture. So much so that I didn’t realize I was developing an issue. About an hour into the class I felt a small droplet roll down the side of my stomach. I dropped my pencil, and placed my hand over my ostomy. Crap. Suddenly the lecture just sounded like a bad Charlie Brown episode, “Waah wah waahhh.” I must have been a little dramatic, because my friend leaned over and asked if everything was okay. I brushed it off and said I was fine. I quickly got up and headed for the restroom down the hall.

Mistake #1. I left my bag with all my supplies in the classroom (good job Kate). I suppose I wasn’t expecting it to be that bad. When I finally made it into the stall I lifted up my shirt to find a disaster.

My first thought wasn’t, how are you going to fix this… it was more along the lines of, how in the… did you not notice this. But what happened next takes the cake. I stared in disbelief at the bag oozing from the bottom of the compromised wafer. As I went for a tissue the bag and wafer completely disconnected and fell onto the floor. SPLAT.

Bravo, you’ve unlocked a level 2 disaster.

“IS THIS REAL LIFE?!?” Just as I threw my question out into the universe, someone walked into the restroom. Cool. I totally wanted company. I actually started chuckling at this point, because well, it was kind of funny. I placed the bag and wafer on some tissues and proceeded to clean up the stoma and my pants. I realized the waistband of my jeans had pushed upon the wafer while I was sitting in class. So much so that it dislodged the bag. After I had everything nearly in order I grabbed the bag, cleaned it as much as possible and well, stuck it back on. YES, I can hear you *eww*-ing, but I didn’t have any other options. Without supplies and a phone I was pretty much out SOL (no pun intended). I held my hand over the bag, walked very carefully back to class, grabbed my stuff and went home an hour early. So much for PCR…

And if you’re wondering, the sweatshirt was thick enough that the leak didn’t show, and long enough to cover the disaster on my pants. I knew I loved sweats for a reason…

My next challenge: getting home. I felt like I was on a bad reality TV show. My apartment was a little over a mile away, and I wasn’t about to try and walk home. At first I tried calling my roommate, unfortunately he was still at work. Next up, Uber.

Uber I am sorry, that was an awkward ride home.

In the end I survived. And honestly, looking back it was pretty hilarious. I’ve been a little more wary about jeans since the incident, but it hasn’t prevented me from rocking a pair from time to time. Now I go for that high-waisted mom-jean look. Which, thanks to strange fashion trends, is back in style (please don’t break my mom-jean dream). Not to mention pretty comfortable over the stoma.

In the grand scheme of things a leak is not the end of the world. Sure it’s an inconvenience, but it’s just a leak. Life happens. Pick up; keep going (and rock them mom-jeans). Good times.

Okay, now that we’ve got that out of the way, let’s talk some practical solutions. Since this lovely incident, I now carry a “bare minimum stoma kit” around with me. My everyday bag is already pretty packed, so I don’t to add a lot of excess. Instead I keep the following items in a small ziplock bag:

1 spare ostomy bag

1 wafer

2 adhesive remover wipes

pocket sized scissors

1 moldable ring

tissues

optional *compact mirror*

Now if you’re a girl this is no big deal –just toss the supplies into your purse. I know it sounds like a lot, but I’ve managed to fit this kit into my smallest bag. If you’re a guy and you don’t carry a backpack this can be a little more challenging. I would just suggest taking the bag and precut wafer, folding them up and sticking them in your back pocket or jacket. Most of the time you can remedy a leak without changing the whole system. Moldable rings or stoma paste is awesome for this… but if you’re like me and you somehow let the situation go “code brown” then you might want to have a little more on hand. If you drive, or have a desk at work you can just keep the kit in an accessible location (that way you’re not forced to lug it around with you… is that a stoma kit in your pants or you just happy to see me? I swear that’s the last terrible line I’ve got for this post).

I’ll follow this post up with some pictures on the ostomy supplies I keep in my bag (a bag-ception of sorts).

Thanks for reading!

Have you experienced leaks? How did you deal with the situation? Do you have any tips or tricks for dealing with small leaks?